Hi Kerry,  

Welcome to our MM family. I’m sorry you had the need to find us, but I’m glad you did. You’ll find that you and Bethan have a wonderful group of people here who has traveled this same road with this rare disease, and they will help you in any way they can.

I’ll first start by saying, learn all you can about moyamoya. There are too many doctors out there that do not know enough about MM, the disease, so it’s been our experience to advise you to learn all you can. It will help Bethan and her step-mum make the decisions she’ll need through the journey ahead. This website has a wealth of information and we’ll be happy to answer any questions we can along the way.

It sounds as though Bethan's step-mum may be in the dark with some issues, and with this disease you can’t afford to be. My advice is, ask lots of questions, and insist on answers you’ll understand. As I said before, your doctor must have experience with MMD if you want a positive outcome, so ask for his/her experience with this disease and never be affraid to seek a second opinion if you're not satisfied with the answers you're getting.

MMD is the narrowing of the blood vessels to your brain, so your brain does not get the proper blood, oxygen and nutrients it so desperately needs. It’s different with each individual, depending on where and how bad their blockage is. Headaches are very common. It may affect your left or right side, or your vision, speech, seizures, etc. depending on the location of the blockage and where the brain is lacking the proper blood flow. MM is a progressive disease, in children it tends to cause strokes or seizures and in adults it tends to cause bleeding or strokes.  

Is Beth going to have a “bypass surgery? If so, what kind? I ask, because there are several different types of bypass surgery for MM, and it’s very important that you have an experienced MM specialist, to know which surgery is best for her specific condition. The concept of all the surgeries is to develop new and more efficient means of bringing blood to the brain and “bypassing” the areas of blockage.

What doctor or hosiptal is Beth associated with? Perhaps someone here has experience with her doctor or staff?

I hope this helped in some way. Please feel free to ask us any questions and know you’ll be in our thoughts and prayers.

Mar